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Will the Interagency Autism Coordinating Committee Finally Get it (Katie, Bob and Suzanne) Wright?

Katie and suzanne By Katie Wright

A few months ago I wrote to the new Director of the NIH, Dr. Francis Collins, and asked to meet him with my parents, Bob and Suzanne Wright Dr. Collins graciously responded saying that he would very much like to have a meeting with us and some autism organization advocates.

My main reason for the request is because the majority of autism families do not feel heard by IACC nor are they fairly represented among the public members.  Only one person of the 20 odd members on the committee has any experience at all with the all too common needs of children like mine, Lyn Redwood. Meanwhile there are committee members from the Dept. of Deafness, Medicaid and Substance Abuse all casting votes for and against  (and it is mostly against) important scientific research they cannot possibly understand. This is absurd.

The lack of services for ASD people of all ages is a critical issue facing our community. Expertise in planning group homes, job training or respite care does not translate to scientific knowledge in stem cell research, oxidative stress, gastrointestinal disease or immunology. Obviously the same holds true for the neurologists on the committee regarding their limited insight into special education or adult services.

In this disparate roomful of scientists, parents and aspergers adults, there was agreement on two things: IACC is failing, it moves incredibly slowly, is way too bogged down with bureaucrats, has yet to embrace innovative research and autism organizations are virtually unrepresented. There was also complete agreement that IACC has done a poor job addressing the tremendous and immediate service needs of children and adults affected by ASD. In order to do justice to both autism services and autism research we need to separate IACC into 2 committees: services and research. That way each subject will have a committee staffed by people with the appropriate expertise.

An even better option is to abolish IACC and form a virtual Autism Institute, much like the HIV Institute. That way we would attract federal members with deeper and more current scientific understanding of autism.

One of the most serious problems with IACC is the total absence of clinical specialists.  Dr. Yvette Janvier, serves as a “public member.” Last fall, Lyn Redwood was advocating for an investment in GI research after speaking about the recent death of young ASD girl who died due to an untreated impacted bowel. Dr. Janvier’s immediate response was not one of compassion, concern or even respect. No, Janvier literally said, “Phhsssss! Anyone could have diagnosed that! In 20 yrs of (neurology) practice I have never seen a sick ASD child or a child with these ‘immune’ problems!” Javier went on and on about how IACC should not focus on such “rare” problems like GI disease or immune dysfunction.

Such manifest ignorance cannot be tolerated on IACC. Dr. Janvier has never apologized for or retracted her comments, or better yet resign.

Wendy Forunier, president of the National Autism Association, representing 12,000 families, spoke eloquently about the need to start biomedical intervention research NOW. NAA receives hundreds of phone calls from parents in crisis who cannot get medical help for their sick children. Wendy also related how some small yet powerful interventions like B-12 shots, carnitine supplementation or the GFCF diet are helping many children yet these interventions have never been studied by IACC. Dr. Collins appeared to agree that the NIH needs to start funding such research and then asked, “what happens if the research proves the intervention ineffective?” We all said fine! At least we will know! Prove us wrong, prove us right, but prove something! Let’s get immediate need medical intervention research going now.

My Dad, Bob Wright, spoke about the public’s huge private investment in autism research. Autism Speaks’ families all over the country are donating what little money they can spare, getting their community to support walks, raising money any way they can. Wright said that we cannot do this alone and that the NIH needs to respond to autism definitively as a national health emergency. Geri Dawson spoke about AS science and the Autism Treatment Network.  This sounds like a great program to educate hospitals about appropriate interventions for medically affected kids.

Becky Estepp, of Talk About Curing Autism also spoke about the struggles her org faces in meeting the needs of its 16,000 member families. So many are in crisis, broke, exhausted, unable to afford or even find appropriate care for their children. Becky said that some ASD families in LA have lost their car and are in desperate straits caring for their sick ASD children. Lee Grossman of ASA said he too receives heart-breaking calls everyday and not one parent has asked, “How close are we on the mouse model?” IACC lacks a sense of urgency and compassion. The federal members are totally disconnected to the needs of our children.

Sadly, many federal members are frequently late or absent to IACC meetings and many seem indifferent about their responsibilities. Many federal members seem to have only the most peripheral knowledge and understanding of autism.  Two YEARS into this process, IACC members required an hour and a half tutorial to learn about ABA!  Imagine a committee of dermatologists listening to a “cutting edge” lecture, “Lots of sun exposure, good or bad for the skin?”  Ridiculous.

Our community deserves better. ASA does a wonderful job advocating for services. However, only Lyn Redwood is focused on funding the necessary research to address the immediate and specific needs of sick children. Why is that? Why has that been tolerated at the NIHM?

I want to apologize to Christine McKee. She is not Tom Insel’s friend or neighbor. Ms. McKee is a hard-working Mom of an affected child. She just applied for an IACC seat and was chosen precisely because she represents no organization. I said to Ms. McKee, nothing personal, but that is outrageous. How does non-involvement in the autism community qualify an individual to represent the autism community?  Why would IACC want to choose a “public” representative who does not represent the public? Hmmm, I wonder….

Dr. Collins summed up the meeting very nicely, saying he now has a very different conception of autism as a disease and was distressed to hear how much suffering there is in the community.  Dr. Collins spoke sincerely about how his background in genomics by no means precludes his belief that it is crucial to investigate environmental factors and that he is not only a “genetics” guy. Refreshing!  At the end of the meeting Wendy, Lyn, Becky and I asked that public seats be allotted to orgs that actually represent the public. NAA, TACA, the Autism Research Institute and Generation Rescue represent hundreds of thousands of families who need to be heard at IACC.

Katie Wright is a Contributing Editor to Age of Autism.



 

Comments

Henderson

Actually, I would love to go. But, I'm not even going to bother putting in an application - all they have to do is google me - and they'll see I'm an environment/genetic type (and NOT the other way around)!!! Not that the ASF would even recognize a pesticide cloud, major roadway, coal plant pollution, etc. if it hit them in the head (or shall I say lungs/skin). Let alone vulnerable mito/genetic susceptibility to viral/toxin damage - a.k.a. vaccine damage).

PLEASE, PLEASE someone (maybe, I don't know... Katie?) convince someone else to do the same thing.

:)

Henderson

OMG! Look what the Autism Science Foundation is up to!

http://www.prweb.com/releases/AutismScienceFoundation/IMFARgrants/prweb3581894.htm

Raymond Gallup


Dear A Mom to Raymond Gallup

Thank you very much. I don't have to worry about reproductive side effective on Eric and a good suggestion.

I would definitely pass it by the residential center which I also mentioned medical marijuana, Marinol.

A Mom to Raymond Gallup

I have been thinking about you and your family almost every day since you shared part of his story with us. I am curious about his testosterone and androgen levels. Our daughter's were elevated and we got them to the low theraoeutic range and maintain them with meds. I have heard many ASD persons enjoy success with this, especially with boys who have aggression issues. You sound so tired, and understandably so. I would pray that this would help your son. I know one form of this (re: testosterone) has been made controversial where boys are concerned but I wonder how the very rare reproductive side effect often touted with one drug can compare with every day life and for how many boys (depending on the severity of their intellectual disability) is this very rare side effect even an issue. For example, our child is, for many reasons, not a candidate for reproduction.

You all are in our prayers, as are so many parents and children on AofA.

Raymond Gallup


By the way, when I contacted the CDC in the 1990s it was about the Brick study. Researchers like Wakefield and Singh wanted to help the families but the CDC was definitely not interested. The one parent who was the spokesperson felt it was an environmental trigger (contaminated water, etc.) and not immune or gastro problems and was not interested in asking them in.

So I knew it was all about politics and in the case of the CDC about protecting the pharmaceutical companies.

Fighting the politics and the Federal agencies who want to protect the drug companies is exhausting and non-productive.
The reason why I don't bother anymore because it is a losing proposition and I don't like to involve myself in losing propositions.

Of course, those that like this should keep pushing but I'm just enlightening people as to what they will face....and they will face it every step of the way.

Raymond Gallup


Good luck with the IACC.

From 1995 to 2001 I fought to get the NIH to fund immune and gastro research and naturally it never happened. Also I contacted the CDC to no avail.

In 1998 I decided to fund autism research with the formation of the Autism Autoimmunity Project. We funded Vijendra Singh, Andrew Wakefield and James Oleske. In 2005 we went out of business.

I find it ironic that more time and money is spent trying to get the IACC to fund research (when we know they are like the CDC and NIH who will never fund immune and gastro research) then to fund research through independent autism organizations.

I'm just glad I'm no longer involved (with the NIH, CDC, IACC, and all the other alphabet Federal agencies) because I have been down this path and it did nothing to help our son and others like him.

Research by independent organizations into the immune and gastro issues of autism will make a difference....and nothing from Federal agencies will do it (no matter how many years are devoted to jabbing these turkeys in the ribs and no matter how many parents are involved in shaking their cages).

The Federal agencies have an agenda.....to get funded by Congress and to avoid any research that will disturb the pharmaceutical companies that look over them and work closely with them.

The Truth and Facts.

Sad and Shameful???

Yes!!!

Nevertheless, it is the Truth and Facts.

Raymond Gallup
One who has been down that sorry road from 1995 to 2001

ObjectiveAutismDad

Katie, this is great... I'm glad you all got to educate Dr. Collins. However, I found his one question disturbing: Dr. Collins appeared to agree that the NIH needs to start funding such research and then asked, “what happens if the research proves the intervention ineffective?” This appears to be a form of projection: they don't want to do the research into causes because they're afraid of what they might find, so they're also not doing the research into interventions because they're afraid we won't like the results. Your response was perfect!

Anne McElroy Dachel

The children with autism that I know sometimes seem like they belong in the Third World. It's incredible to think that so much suffering can be going on, affecting hundreds of thousands of American children. It's ignored. It's trivialized. Experts purposely devote themselves to research that couldn't possibly explain what's happening to our children. After so long a time of nonfeasance, the IACC can be seen only as a failure. Why should any more time or money be wasted while nothing is done to stop this disaster?

Anne Dachel
Media

MAKE AUTISM STOP

I'd say the NIH and Dr. Francis Collins are well informed.
Thanks Katie, Bob and Susan.

MAKE AUTISM STOP

Hope

Thanks to the Wrights, Becky, Wendy for speaking up for all who need it. Katie thanks a million for sharing the story of the day. Gives us hope!

michael framson

The only thing which would be especially encouraging to hear from Dr. Collins is some sense of time frame, that actions will be taken.

Hopefully, urgency and better representation will be the operative words.

Debbie

When everything gets so jumbled in the day to day, thank you to you and your family for cutting through the clutter to see what is important...getting our children the help & future they deserve!

Heidi N

You are such a great writer! I am so glad you are on our side! Truth is, thousands have been recovered, and us parents with these recovered children are still waiting for someone in the government to ask us how we did it. We have already done much of the work for them. What are they waiting for? I will Volunteer to meet with the IACC as a representative of the LIA Foundation and mother of recovered children.

Henderson

Katie - “Lots of sun exposure, good or bad for the skin?” brought a true smile to my face.

Thank you for keeping tabs on the IACC for all of us.

Now, you'll have to keep an eye on Christine McKee. Maybe she works for Banyan Communications... tee hee.

Thank you to your parents, all the board members, the scientific advisory board, etc... without them - I wouldn't have the papers & research to continually shove under my research scientists husband's nose.

Unlike Jen's husband "who does very high level antibody research, and has been involved in the biotech industry for over 20 years." I wish - wouldn't that be a fantasy come true. My husband is addicted to corroborated, peer reviewed journal articles (as anything he or his research team "proves" has to be just that) - you can only imagine our n=1 arguments re: ASD.

Anyway, my true thanks to everyone at the Autism Speaks organization/the old Cure Autism Now crew/etc. Granted, Autism Speaks is just a fraction of the scientific research out there - but they are true leaders - and are certainly true coordinators - and I appreciate so much that they make it all easily available (anyone else remember the un-navigable CAN and NAAR sites?).

cj

Great picture with the backdrop!

Natasa

Summary of abnormal biomedical findings in autism (does not include studies published in last 6 months or so)

http://www.autismcalciumchannelopathy.com/Abnormal_biomed_findings.html

http://tinyurl.com/ylkn5jw

bensmyson

Leukemia (27.1 percent), neoplasms of the brain and other nervous tissue (16.6 percent), Hodgkin lymphoma (7.2 percent) and NHL (6.6 percent) are the most common types of cancer in children ages 0 to 19 years.

Currently, there are approximately 245,225 people of all ages living with leukemia in the United States.

It is anticipated that approximately 21,870 total deaths in the United States will be attributed to leukemia in 2009

The leukemia death rate for children 0 to 14 years of age in the United States has declined 88 percent from 1969 to 2006. Despite this decline, leukemia causes more deaths than any other cancer among children and young adults under age 20. About 460 children under the age of 15 are expected to die from leukemia in 2009.

It is estimated that in 2009, 3,509 children under the age of 15 will be diagnosed with leukemia throughout the United States.

The number of 8 year olds in 2002 was roughly 1%. Nationally, there were 36.8 million children 5-13 in 2003. That's roughly 360,000 children 5-13 with autism. 7.5% of them will die before they reach 35 yrs old. If those 1 out of 100 numbers covered the entire autism population that means that 225,000 will die this year before they reach 35.

"It is anticipated that approximately 21,870 total deaths in the United States will be attributed to leukemia in 2009"

It as estimated that about 460 of 3,500 est. kids with leukemia died in 2009. 13% of the leukemia population under 15. Certainly no one knows the exact number of children that die from complications of autism, but we should.


bensmyson

From 2009, ten years later

J Autism Dev Disord. 2009 Oct 17. [Epub ahead of print]
Mortality in Autism: A Prospective Longitudinal Community-Based Study.

Gillberg C, Billstedt E, Sundh V, Gillberg IC.

Institute of Neuroscience and Physiology, Child and Adolescent Psychiatry, Queen Silvia's Hospital for Children and Adolescents, Gothenburg University, Kungsgatan 12, 411 18, Göteborg, Sweden, christopher.gillberg@pediat.gu.se.

The purposes of the present study were to establish the mortality rate in a representative group of individuals (n = 120) born in the years 1962-1984, diagnosed with autism/atypical autism in childhood and followed up at young adult age (>/=18 years of age), and examine the risk factors and causes of death. The study group, which constituted a total population sample of children with these diagnoses, were followed up in Swedish registers. Nine (7.5%) of the 120 individuals with autism had died at the time of follow-up, a rate 5.6 times higher than expected. The mortality rate was significantly higher among the females. Associated medical disorders (including epilepsy with cognitive impairment) and accidents accounted for most of the deaths, and it was not possible to determine whether autism "per se" actually carries an increased mortality risk.

PMID: 19838782 [PubMed - as supplied by publisher]

bensmyson

Jen -
From ten years ago

Mortality and Causes of Death in Pervasive Developmental Disorders
Torben Isager

Glostrup Hospital, Glostrup, Denmark

Svend E. Mouridsen

Bispebjerg Hospital, Copenhagen, Denmark

Bente Rich

Fjorden Hospital, Roskilde, Denmark

In the present study, we rediagnosed and followed a clinical sample of 341 children with related pervasive developmental disorders for an average of 24 years (current mean age of 31 years; range 14-48 years). Twelve patients had died. For the whole group crude mortality was 3.5 percent (95 percent Confidence Interval 1.8-6.1 percent). The standardized mortality ratio was 1.9 (95 percent Confidence Interval 1.0-3.4). For the diagnostic subgroups crude mortality was: infantile autism 3.4 percent, autistic-like conditions 3.4 percent, borderline childhood psychosis 2.5 percent and disintegrative psychosis 15.4 percent. Mortality was related to intelligence in a U-shaped fashion, with both severe retardation and normal intelligence being associated with a relatively high risk of death. The distribution between natural causes and unnatural causes of death (accidents, suicide) resembled the pattern seen in a background population of adolescents and younger adults. Five of the 12 deaths were related to epilepsy.

Autism, Vol. 3, No. 1, 7-16 (1999)
DOI: 10.1177/1362361399003001002

Sylvia

Katie Wright never ceases to amaze me! Her articulate accounts of the issues are an amazing gift to our community. I am so thankful she is fighting for our children!

Speights Mom

I have to echo the thank you to Katie and her parents. I know the time it takes for you to do this. What is it we need to do to get the committee changed? Is it letter writing and phone calls to our congressman. .? Tell us.

Nancy

I think equally as dangerous as the CDC, NIH and the clueless doctors are these ND parents who are out there backing the scumbags like Dr. Offit, Dr. Gorski and others who have NO interest in ever getting to the bottom of autism. Talk about selling your child to the devil. I will never understand how these parents can bash all the other parents who know damn well there is a vaccine connection and biomed works well. I wish these parents nothing but misery for continuing the misery in their own kids and putting up a wall for all of our kids. Our voices MUST be heard over their's.

Jen

Hi Katie:

I have many doctors and scientists in my family, including my husband, who does very high level antibody research, and has been involved in the biotech industry for over 20 years. He constantly says THIS and I hope you will convey it to Francis Collins: "The research community has NO comprehension of the true morbidities and mortalities of autism"-a fancy way of saying they have no idea how truly horrible this disease is, and the degree of suffering the children endure. The scientists see these kids as very spaced out and cognitively altered but otherwise ok, not as being in a miserable state physically. If the research community had accurate M&M data (including how autism impacts the whole family), they would have a huge sense of urgency and would be throwing one experimental treatment after another at these kids (the same way they currently do when someone is dying of cancer). Autism is truly awful, a nuclear bomb, and they need to know this.

Kathy Blanco

I've known for a long time, that passing off bowel problems and immune problems, and mito problems as a convenience factor. No one wants to explore. No one wants to PAY for the tests by insurance companies, or else it will be labeled "unproven". Perhaps the biggest problem is that we have not proven in our science of yet, that these things do exist. But if I do a simple medline search I find them? Is it that these people are too busy being political/hiding their butts? Or does it go deeper than that, that they really don't care? My thought is of the latter idea...that they don't care. Once you mention the A word to a neuro, the mind suddenly goes blank, the deer in the headlights look, or the more obvious, back to you while he types on a computer for his medical records...so as to hide the fact that maybe a tear would ensue.

When you look at kindly vets, who have seen this damage for some time, you get a hint of what is going on. I found this below, and thought to share, as it had many parallels with what we are trying to say to these committees. However, as much as I love the work and the power of our message, can we start the new focus? I mean, do these committees MATTER in the long run? I would like to propose that we do a "who is first on the moon" type of research. That being said, that we QUICKLY and ABUNDANTLY research our side of the argument, fund that with a combined effort from all NPO's, steer our focus away from such committees, and then when the science is undeniable, who can stand upon non science? When the science clearly shows these connections, and are done to the highest standards, then they will be ashamed of their positions. We must land on the moon first...

Here is what one vet said

Mr Dean says that reactions are extremely rare and then pins the blame on genetics (it’s that familiar scapegoat the breeder again). Well I happen to disagree with him. Other factors can render the chance of vaccine reaction more likely, including diet, stress, concurrent drug therapy, and the general health of a dog. This is not because I’m one of those ‘wrathful homoeopaths’ that Mr Dean so likes to snigger about, but because I’ve taken the trouble to examine the scientific evidence in the hope of keeping my remaining dogs alive beyond middle age.

One thing appears puzzling to me: how prevalent are these diseases we are urged to vaccinate our dogs against? The National Office of Animal Health doesn’t know. The Kennel Club doesn’t know. The Royal College of Veterinary Surgeons doesn’t know. The RVC doesn’t know. MAFF doesn’t know. I know they don’t know because I asked them within the last fortnight. In fact, we are being urged to weigh the risk of unquantified disease against the risk of under-quantified vaccine reactions. Another thing nobody knows: how common these reactions are. In all but one or two of the cases that have been reported to me – even when the vaccine manufacturer admitted liability – no-one sent off the Yellow Form – MLA 252(A) – to the Veterinary Medicines Directorate.

I venture to suggest that, far from being an open and shut case as Mr Dean suggests, the jury is still out on the subject of vaccination. The case hasn’t even been properly presented yet. At the present time the playing field is rather stacked in favour of the home team: most dog owners accept the advice about vaccine products from people who make money from flogging the products. The Canine Health Census is asking the consumers to speak. Unlike the veterinary profession, as represented by Mr Dean, we are actually listening. The evidence against vaccination – if you have ears to hear – is utterly damning, of which this letter is but the tip of the iceberg....

And so it goes...that vets and their dogs and cats, are getting angry too, but they have for a long, long, long time...and what of our children? Are they not human beings, with potentials, and lives to live?

It's all good and right to unite and to move mountains Tanners Dad...but we cannot move them, if they are firmly planted in the ideology that vaccines STILL have any worth. Until we release the burden of political correctness, vaccinations will continue to damage. That is the only strong advocacy I tell people now...if we boycott the whole program, then mention and argument and committees on why we feel that way will be heard. Until then...well..good luck with that...

Amber

Thank you so much to the Wright's for their advocacy on behalf of so many children and families that don't have the platform to do so.

Those are great ideas also on changing the IACC, too.

Realizing that the current IACC is failing...priceless.

Kristine

Terrific! I needed this good news piece today. Now that he has listened and talked, I hope he can translate that into action.

Kelly

When will we find out whether or not NAA and TACA will get a seat at the IACC table?

Christopher Smith

Thank you so much for arranging this meeting and for giving Dr. Collins a much fuller sense of what we autism families are going through. Maybe, just maybe there will be some positive change coming to IACC!

Holly M.

Thanks Katie, Bob and Susan.

claudine Liss

You are a hero.

Natasa

Thank you Katie!!!

Alison MacNeil

Thank God for Katie Wright! How can we support your work and follow up after this meeting? Could we each send personal letters to Dr. Collins telling our childrens stories? I want to add momentum to this great meeting. I am so full of anger with the notion of Tom Insel ending IACC meetings early "because there isn't enough to talk about", or IACC committee members skipping meetings or coming late. How dare they? I cannot tell you how thrilled I would be to see the IACC disbanded and Tom Insel publicly shamed for his ineffective leadership. How can we help?

MB

"Dr. Collins summed up the meeting very nicely, saying he now has a very different conception of autism as a disease and was distressed to hear how much suffering there is in the community."

It's absolutely stunning that the head of the NIH is unaware of the medical issues associated with autism.

Autism needs to be moved out of the DSM. Mainstream medicine needs to recognize autism as a multi-system, multi-factorial **medical** disorder.

JReed

AMEN!!! and Thank you from our hearts for all the hard work each one of you do everyday!

Kevin

Katie, I love reading your posts. Please be aware that you are loved so much for what you are doing for our families. Broke and stressed we are but we feel so much better that you are out there fighting for us!

Bad Apple

I went to seek a diagnosis for myself shortly after my oldest was evaluated for autism. Let's see, she was around four at that time so that means it was a decade and a half ago at least.

I remember one of the Kaiser Permanente doctors asking me about my bowel movements. Maybe it shouldn't have seemed odd to me given that my own daughter had had similar issues. But when she asked me how often I had bowel movements it seemed odd to me that she'd ask me that. What's it got to do with autism? I asked myself.

When I told her that I have typically, all of my life, had them not daily but rather about every three days, she looked interested. “You do know, don't you, that that's unusual?” I just shook my head no. She asked me if it ever bothered me, and I told her well a little bit but not really all that much. I told her that I'd never given it that much thought. She nodded her head and took down some notes, and left me with the distinct impression that this meant something.

They knew fifteen years ago. They knew it was connected with bowel problems, as well as with vaccines.

(Oh and btw, while I really hate to think of this as something that oughta be done on schedule, since I started taking the B6 my 'timetable' has been more like most peoples.)

Tanners Dad

Thank you Katie. I have sat in on those meetings and really wanted to throw things at times. You said it well. All Talk & No action... Sign of the times. It is time for parents to Unite & move mountains. #UWAC Unity within the Autism Community... We are strong... We can be a strong voice. Thanks again.

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